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Concerned about a BCR-ABL result

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Hello everyone,
Hope you are all keeping ok.

I was diagnosed with CML in January 2022. Been on a bit of a roller coaster ride since then. In February 2023  I had a blast crisis. And doctors said I now had ALL. That has since been changed to CML with a blast crisis.

In October 2023 they found I had leukemic cells in my spinal fluid. That was cleared after a series of Intrathecal chemo injections.  I am still having ITs now, currently once every 6 weeks.

 I have been on three different TKI’s since I started early 2022. They didn’t all fail but sent my blood levels down to levels where the doctors weren’t happy.

In April this year I started taking Asciminib. It has been doing its job nicely and my BCR-ABL came down to 0.158. Yay I thought, I am getting there. After a recent test though they said my BCR-ABL had gone up to 5.047, which I find concerning. I am having another test for BCR-ABL on Tuesday the 26th November. I have changed the time I am taking the pills now as I know that I am not to eat within two hours after taking the pills. Not that I thought I was anyway. Maybe the BCR-ABL result was wrong. Or is there something more sinister going on? To note I have the ASXL1 mutation. Has anyone else had such a change in results like that?

Anyway thanks for reading this. Hope you all have a good day.
Paul

Rambler hang in there, that what doesn’t defeat you makes you stronger.

Interesting you note timing in your dosage regimen.
After 11 years on Imatinib I was switched to Nilotinib as the Imatinib effectiveness had plateaued.
I was started on 400 bid Nilotinib which slammed me to the ground.
I remained at that dose for a little over 4 months before I couldn’t take it any longer.
At that point, much to my oncologists chagrin, my numbers hardly moved and he asked that I be put on Asciminib, which was rejected by my health plan.

At that point I was concerned, to say the least, and I started to pay attention.
I realized that I was dosing improperly as I was eating 1 hour before taking the pill instead of the directed 2 hours before.
I actually had the dosing flipped as the directions were 2 hours before and 1 hour after eating.
So I changed to not eating 2 hours before and after to make it easier and have been doing that ever since which is over 2 years.
As a result of the change I achieved MR5, undetectable, within 4 months.

Although this is more anecdotal rather than definitive and scientific, I do attribute the change to correct dosing to the eventual positive outcome.
I hope this is helpful.

BCR/ABL Readings during initial change to Nilotinib in 2022:

2/10/2022: 0.0421 @400mg qd Imatinib
5/12/2022: 0.0197 @400mg bid Nilotinib
7/8/2022: 0.0181 @400mg bid Nilotinib
9/15/2022: 0.0059 @300mg bid Nilotinib (after 1 month of correct dosing)
12/19/2022: 0.0000 @300mg bid Nilotinib

I wish you the best of outcomes Rambler,
Joe

Hello Joe,
Many thanks for your detailed reply, I much appreciate it.
Congratulations getting to undetectable. Wonderful outcome.
Yes I was suspecting my eating pattern, so now I changed that a few days ago.
I will see how it goes from now.
Thank you and all the best

Paul

Hey Joe,

Do you also keep exactly 12 hours between taking the medicines?

Hello Igennem,
Many thanks for writing. I would just say I take two 40mg pills at the same time, once a day. The doctor here in the UK was happy with that.
And yes I am now making sure I take the pills several hours after food, rather than just 2 hours, and also a couple of hours before eating again.
Thanks again. All the best
Paul

Regarding the fasting interval, I wouldn’t be too concerned about making that longer. The fasting is needed to stop the drug being MORE bioavailable, so if you eat during the fasting window it makes the drug more potent, not less. So don’t make your life more difficult by making your fasting window longer than necessary.

David

Igennem,

Yes I do try to adhere to the 12 hour rule.
I have two alarms set on my phone, one for 9 am and the other 9pm.
These are just to remind me to take the pill but of course I know that in general I can’t eat after 7pm and not before 11 am.
I’m not a foodie so adhering to this schedule is manageable.
I generally try to keep to the fast rule to help manage my weight.

JP

David can you confirm that applies to Nilotinib only? I was reading something last night that i think stated that Asciminib has reduced potency if food is in the system. I think it said it was reduced by 67% for a fatty meal and 30% on a low fat meal. I have recently moved to it and was looking into extending the fasting time after taking the medication due to my last BCR being very slightly higher on my last blood test.

Hello David,

Many thanks for your message. I had a blood test this morning. Should hear back next week to see what
BCR-ABL number is. I will still move the time away from taking the pills. Makes me feel better.
I will let you know how I get on.
Thanks again.
Have a good evening

Paul

Hello David,

Many thanks for your message. I had a blood test this morning. Should hear back next week to see what
BCR-ABL number is. I will still move the time away from taking the pills. Makes me feel better.
I will let you know how I get on.
Thanks again.
Have a good evening

Paul

Asciminib Food
Moderate Food Interaction

Food may reduce the absorption of asciminib, which may lead to lower blood levels of the medication and possibly reduced effectiveness. You should avoid eating for at least 2 hours before and 1 hour after taking asciminib. Talk to your doctor or pharmacist if you have questions on how to take this or other medications you are prescribed. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Hi Joe,
Thanks for your latest message
Thanks for your message.
I started taking 30mg of Ponatinib last Thursday. Today I started on immunotherapy via a CAD pump, which lasts for
twenty eight days. So doctors will see how I go.
As regards your message about fasting. Yes  have considered that. I am in hospital for the next two weeks as they want to
monitor any side affects to the immunotherapy drug. Bit difficult planning fasting where I am.
My daughter in law in New Zealand has recommended an alkaline diet. Think that would be difficult too.
Will get back to you at some stage

Many thanks for your advice

All the best
Paul
PS from Mrs Rambler .  Paul is 5 foot  11 inches, and has always been skinny.  He’s only about 67 kilograms, and is one of those lucky people who can eat what he wants and not put on weight.  Do let us know how you get on Joe, if you embark on a fasting routine. It sounds good in theory.

How are you doing Paul? How is the food? Are you all caught up on world events? Send us some good news.

Just sent you a message Joe, from Mrs Rambler

Thread continued from: 
Low platelets, low WBC. First post